Month: September 2015

My middle son was diagnosed with Type 1 diabetes almost 2 years ago and celebrated his 13th birthday in hospital. We had noticed he was thirsty, tired and was going to the toilet a lot. Having seen a colleague’s child diagnosed, I was familiar with the symptoms and got him to the doctor quickly. I’ll never forget the drive home from the hospital: very reminiscent of bringing your baby home for the first time: wondering if you are up to the job and if you can really do it!

2. What is the most challenging part of having a loved one with diabetes?

Not allowing Type 1 diabetes to define my son, me or my family. I felt swallowed whole by this disease when my son was first diagnosed but reminding myself that it’s not me who has diabetes and using the years I have with my son, before he leaves home, to help him to learn to manage it as best he can has become my focus.

Allowing my son to be a normal teenager is really important. I do not expect perfection but I do expect honesty. If Blood Glucose levels have gone crazy, we look back over the day and try to figure out what may have caused it. I never, ever blame. So far this has worked well.

Not letting diabetes dictate what you do is also a challenge. Your instinct on diagnosis is to batten down the hatches and huddle together. I’m so thankful for the advice of our educator to fit diabetes into our lives and not vice versa. My son has played several sports to a high level, has sleepovers, goes on school camps and makes the most of life. As a family, we are really busy. We have camped, and travelled overseas. Next year my son and husband will go on a club rugby trip to Fiji.

Not letting diabetes overtake your normal parenting decisions can be hard too. Teenagers should and must push boundaries and take risks and then learn from the consequences. Even with Type 1 diabetes, and all the complications it brings, teenagers thrive knowing there are rules. We have all the usual situations in our house with the three boys. None of us are perfect.

Realising that you can follow all the diabetes rules and it still can go pear shaped, was a big learning curve. Hormones, stress, sport and many other factors can swing in from left of field and knock everything out of whack. Keeping calm and working with your team to try to figure out the way ahead is about all you can do.

3. Has diabetes coming into your lives changed your family dynamic?

I’d be lying if I said it hasn’t at times. It’s the first thing that comes into my head most mornings and the last thing I think of at night. It follows us around in what we do: sometimes it’s like a stroppy toddler, demanding and moody but at other times we almost forget it’s there.

In some ways, I think we are better people. I notice that we don’t stress the small stuff any more. I’ve always tried to have the approach of looking at any problems and then thinking of how we can fix them: friendship issues, problems at school. These things can generally be fixed, unlike a broken pancreas!

I really believe too that having someone in your life with a chronic illness makes you look at everyone else differently: you tend to look a bit deeper and see past the obvious. I try to be a kinder person since my son’s diagnosis and I see this too in how the rest of my family interacts with other people.

4. Have you adjusted the way you cook for the family at all?

We have access to a great dietitian who told me not to rush out and buy all the diabetes cookbooks. I ignored her, bought them and have hardly looked at them! We basically eat the same, but a healthier version. I bake and make lots of snacks and have found I can cut out so much of the sugar but cakes and biscuits still taste great.

My son has grown 10 cms in less than a year so he and his two,very tall, brothers take a lot of filling! I try to stock the cupboards with healthy options and we talk about how foods can be low or high GI and the impact of that.

In amongst all this, I am very mindful that my son is a normal teenager. There are times when he goes out with his friends to hang out or play sport and I don’t see him for the whole day. He manages really well and eats just like every other teenage boy on those days.

5. What is the best advice you would give to the family of a newly diagnosed person?

Be gentle on yourself and take it easy. Find a couple of people you can talk to and confide in. I’ve got less friends than I had but those I have were there for me through the early days and now I feel lucky, as I know who I can count on.

Avoid the people who like to tell you scary stories. Sometimes people have no filter between their brain and their mouth. I try not to blame them but I do not seek out their company.

Don’t get too excited every time a cure is announced. Staying positive for the future is important but I’ve lost count of how many cures have been announced in the last two years.

Exercise is a great stress reliever. I go for walks a few days a week and find I feel so much better.

Be pro-active in getting your child’s school to do the right thing. I was afraid of being a ‘helicopter parent’ initially but now I am much more direct. It only takes one scary incident and you find your inner strength. Don’t mess with the mum of a child with Type 1 diabetes!

6. How has the Internet helped you?

I avoided the internet for most of the first year as there are so many scary stories out there. Once I had more of an understanding of how my son was doing and the basics of diabetes management, I jumped in again and found I was more drawn to blogs and more recently to twitter.

I made the decision to start my own blog in May 2015. It’s my therapy as, in my day to day life, I don’t talk about diabetes very much at all. I know there are people in the Diabetes Online Community who get what I’m saying and I get a lot of information and even a few laughs from this lovely group of individuals. I feel like I have found my tribe.

Learn more about raising a child with diabetes by following Mum of Type One’s fascinating blog or stay connected through twitter @mumoftype1

Like this:

I was diagnosed with type 1 at age 17. The doctor that I went to see failed to diagnose my initial symptoms, and a few days later I ended up in hospital with diabetic ketoacidosis. I’m glad it happened that way, because it connected me to the diabetes clinic at my hospital. I’m not sure if I would have received the same support otherwise. I was also really happy that all my symptoms were gone, so having diabetes didn’t feel like a huge setback. I’m not sure how well I would have reacted to the news if I was diagnosed in the doctor’s office and sent home.

What is your greatest daily struggle?

Food. I have a reasonably healthy diet, but I struggle with the snacks and temptations in between. I’m a terrible sweet tooth. I could easily eat a whole block of chocolate if it was acceptable, and I have become a bit obsessed over finding the perfect Cannoli. I grew up eating junk food every day after school, and it’s been a difficult habit to break since being diagnosed with diabetes.

Has diabetes ever affected your schooling or career?

I count myself very lucky that I was diagnosed after I had finished High School. Although having diabetes in school might have forced me to be a little more open about my condition than I am now. I have definitely drawn upon my Marketing and Communications degree in building my diabetes blog and online presence. I’ve become extremely passionate about diabetes advocacy through my blog, and I would love to make a career of it someday.

How has blogging affected your diabetes management?

Before I started my blog, I knew nothing about diabetes beyond my own ability to live with and manage it. I never would have guessed that there was even such a thing as the Diabetes Online Community (DOC). Joining the blogosphere and the DOC really ignited my passion for blogging and diabetes advocacy. I love blogging because it makes me think about my diabetes management every day. It’s nice to have my own space to vent, and I find it therapeutic being able to reflect on a situation when I’m in a better headspace. I feel the best about my diabetes in 2015 than I have in any other year, and I credit that to blogging and interacting in the DOC. The people in the DOC provide a daily source of support, inspiration and motivation. I barely know anyone with diabetes in real life, so it’s nice to have somewhere to talk with people who just “get” it. And I really relate to these guys because they aren’t celebrities or athletes…they’re ordinary people living with diabetes, just like me.

What is the best advice you would give to a newly diagnosed person?

I would tell them about the wonderful Diabetes Online Community. I would encourage them to create a Twitter account. Join in weekly support chats such as #OzDOC and #DSMA. They’re a great place to introduce yourself and make connections with other people with diabetes. Read diabetes blogs and take an interest in the diabetes world. There’s so much valuable information and support out there to gain. I really wish I had found the DOC a lot sooner than I did.

Has there been a moment in your life when you were grateful for having diabetes?

I don’t know if I would ever say I’m grateful for having diabetes, but I’m grateful for the opportunities that have come from it. I am finally living my dream of being a successful writer every day through my blog thanks to diabetes. I was really proud to be able to advocate for access to test strips in Australia through my column for Insulin Nation. It even resulted in a small policy change from Diabetes Australia. I also feel really fulfilled to have a purpose and passion beyond my day job.

Read more articles from Frank by following his blog Type 1 Writes and keep up to date on twitter @FrankSita. You can also learn more about Frank by liking his Facebook page!

Has there been a moment in your life when you were grateful for having diabetes?

“There’s never been a single moment where I’ve thought ‘Thank God, I’m diabetic,’ but I think having the disease has made a huge, and mostly positive difference to my life. For example, I think it was thanks to the discipline I had to develop when managing my glucose that helped me work hard and get in to Oxford University. And I’m pretty certain that if I wasn’t diabetic I wouldn’t have run the London Marathon, having to marshal the disease as well as condition my body gave me the extra motivation to even begin training. I wanted to prove to myself that diabetes wasn’t going to stand in my way.”

Have you done anything to benefit the diabetes community?

“When I was 18 I wrote “Joe’s Rough Guide to Diabetes” to help people learn how to take control of their glucose while living a normal life. It was published by Wiley and 20,000 copies were bought and distributed by Sanofi. Since then I’ve re-written the book for a second edition, and designed “Joe’s Small-in-one”, a carry case designed to take all you need for 24 hours. Together, these products mean that you can learn how to manage your diabetes and very conveniently put that knowledge into practice.

I give talks about diabetes to lay and professional audiences, telling people what it’s like to live with a long-term condition, myth-busting and helping to improve the relationship between healthcare providers and their patients.

I chair the project management group of a joint King’s College, London – Warwick Medical School study looking at the impact of digital communication on the treatment of long-term conditions in the NHS. And I encourage all diabetics to get involved with research if they can – it’s a fantastic feeling to be helping to shape the discussion of what future healthcare should look like.

I am also now working with Sanofi to create an innovative patient event for World Diabetes Day. It will be the first of its kind in the UK, bringing together people with both types of diabetes to talk about the issues that really matter to us.”

Does diabetes define who you are?

“In some ways, it does, yes. It’s impossible to be involved in trying to improve the treatment of the disease without being defined by it in some way. On a deeper level, I think it defines me in that the major achievement of my teenage years was learning to take control of my diabetes and overcoming the stigma of disability I felt upon diagnosis. But there’s definitely more to my life than just diabetes. I’m lucky enough to be in a loving relationship, I have great family and friends, I have a penchant for bad jokes, I laugh loudly and (I’m told) I talk a lot. On top of that, I’m writing a Tudor novel! Of course, all those things will be tinged with diabetes if you think enough about them, but mostly I think of myself as ‘Joe’, not ‘Joe the diabetic’.”

What is the best advice you would give to a newly diagnosed person?

“I think the fundamental thing if you’re newly diagnosed, is to take responsibility for your diabetes. It’s a nasty shock and it’s hard to take sometimes that you’ve lost a bit of your freedom. I know I found it difficult. But once you have the mind-set that says ‘this is my problem and I am going to find a way to solve it’ everything flows from there. After that, look to get educated, learn to carb count, and discover how exercise and alcohol and illness effect you. Don’t be afraid to experiment, one high blood sugar may feel a bit horrible but if you learn from it, it can give you a lifetime of understanding and improved control.

Oh, and get on a pump! They don’t work out for everyone, but mine’s been a blessing. It restores almost all the feeling of independence you can lose on diagnosis. And it doesn’t feel weird, honest!”

What is your greatest accomplishment?

“There are a few things I’ve done that I’m proud of: getting in to Oxford, getting a Distinction in my first year (I’m a geek, sorry!), writing the book and then having it published, giving a talk to about a thousand people at the Diabetes UK Professional Conference, designing the Small-in-one and seeing it sell, appearing in the Times to give an interview about diabetes, running the London Marathon, and (fingers crossed) writing a novel before 30. But I think my greatest accomplishment has been much less obvious than any of those; overcoming the depression I felt after diagnosis and taking control of my life. Without that, none of the other achievements would have been possible.”

Thank you Joe for sharing your story. Learn more about Joe, his book, and any of his adventures by following his twitter @joesdiabetes. You can also purchase the small-in-one by clicking here!

I was diagnosed at age 52. A conventional analysis would say I had developed sedentary and overeating habits in childhood that drove the expression of a genetic predisposition to T2DM. An alternative analysis would suggest that undiagnosed childhood insulin resistance and neuropathy drove the development of those habits, and precipitated a vicious cycle. In either case, I have half a century’s habits that make me “more diabetic” unless I counter them with more-than-habitual activity and more strategic eating. For me, glucose data are a much better motivator of this discipline than are weight or even belt-notch data—which brings us to the struggle to obtain adequate testing supplies in the face of a government-insurance establishment that rations them to essentially useless levels. And by the way, when I manage glucose levels, the weight and waist-size numbers fall with them.

Have you found any good things about having diabetes?

I’m healthier now than when I was diagnosed. Had I continued along the behavioral path I was on before diagnosis, I might well be dead by now. Also, the research I started reading and evaluating to save my life contributed to my current career as a clinical research editor and interpreter.

No. It’s defined certain choices and possibilities in my life. That includes both limitations and opportunities.

Thank you Michael for the brave and inspirational responses. To learn more about Michael and keep up to date on his battle with diabetes follow his blog diabetes2remission.blogspot.com! You can also follow him on twitter for daily updates @T2DRemission.